Colitis and diet

[cakedup]

Ds (21) recently diagnosed with ulcerative colitis and currently experiencing a flare. Main symptom is diarrhoea.

I'm just wondering what experiences others have had in relation to diet - whether it's made a big or little difference.

I wonder if there are foods that might be triggering his flares and would like to investigate this under the direction of a dietician. Any experience of success with this via nhs?

We can't afford a private dietician but would still like to hear any experiences of any success stories. I would even consider getting a loan if I thought it could really help.

Also, I do the shopping and most of cooking at home. Normally a high fibre diet involving lots of veg and wholefoods, beans, lentils - which I have temporarily cut out due to his flare. Its been replaced with white bread/pasta, and increased eggs/potatoes/tofu. I hate having to compromise a healthy diet but don't want to worsen his diarrhoea. Anyone have experience of how much difference it actually makes?

Thanks in advance 💐

I think you son needs find what triggers him
i deffo struggle with pulses and loads of raw veggies
a food diary is useful
avoid things like flaxseed - these caused a massive flare for me as they really irritated my gut

My dad had UC. His biggest trigger was stress. His diet was very simple (farmer) and rarely changed. It was stress that triggered him. He had it quite severely at times needing hospitalisation. Not sure if that is any help to you but sharing in case it is.

Have a look at Low FODMAP diets.

Basically beige, low fibre/ no skins

Stress is a major factor as well in my experience as well.

My person with UC mostly manages to avoid flare ups these days but has to really limit cream, spice, mushrooms and things like baked beans and bizarrely drinking tea (but no issue with coffee!).

Hmmm, ds is a fairly anxious person with OCD. First symptoms appeared during degree so I did think that might be a factor although he insists it was all 'good' stress

I've heard of it but again, would prefer this was done under guidance of dietician.

My 19 year old son has also recently been diagnosed. He doesn’t feel diet makes a difference really. He can’t eat very healthy high fibre foods though, he’s better with foods considered unhealthy, like high fat content foods. Infliximab infusions every 8 weeks are helping.

I found rich dairy triggers me as well - so rich cheeses and cream and rich sauces - I often find that if I eat out somewhere with rich food I really notice it! Other than that, diet didn't make a huge amount of difference.

But stress was the major trigger for me - which included the stress of going anywhere without being able to map out access to loos the entire way, especially first thing in the morning. I only went into remission when I stopped working and commuting (unconnected with my illness).

I was diagnosed and had the first 5 years of care privately and am now under the NHS and neither service suggested seeing a dietician. I did find https://www.crohnsandcolitis.org.uk had useful information - have you looked there? My impression is that diet is very individual and its a bit of a trial and error process for what works for any individual.

I was diagnosed at a similar stage in life. I’m in my 40s now so quite far down the line.

For me, the single most important thing in managing the condition is medication. I’m on maintenance dose mesalasine daily, plus topical for flares, but I’ve been on a bunch of different things over the years with a lot of trial and error. Encourage your DC to engage with their medical team (frustrating though that may be at times) and go back and push if the medication suggested doesn’t work. There are loads of options.

On the diahorrea, sorry if TMI but is it constant, or nothing for a few days then a flood? I have the latter and find 100ml of prune juice before bed helps to open the bowels daily and prevent the build up. It seems counterintuitive when you have diahorrea, but it works for me. It was private dietician recommended, but I only had / paid for two sessions and they were well worth it.

Seeds and nuts best avoided as they can get stuck in the irritated tissues (smooth peanut butter fine though). Flaxseed especially. Also, I find Diet Coke is bad.

You sounds a lovely supportive parent. It’s a lot to manage at the beginning, but it does get easier. Good luck!

Sorry to hear, I feel so bad for ds. Not the greatest diagnosis for a young adult (although by far not the most either!). It just seems to be one thing after another for him.
Ds also doesn't feel food makes a difference but it could be one ingredient that's hidden in lots of foods.

Thank you - yes, I've been on that website researching all morning! Diet is such a sketchy area. Consultant seemed to dismiss it too. But I'm more interested in personal experiences, as it could just be not enough research has gone into it, its too individualistic to quantify or there's no funding to support it.

I appreciate hearing from you since youve had this condition a while. Ds is taking mesalazine and due to flare, has had to increase his dose. I recall consultant not recommending to take increased dose for long periods of time though. He indicated if it didnt work, steroids would be considered. I'd rather he didn't move on to stronger med/steroids hence wondering if diet changes could help.

Diarrhoea is constant on a daily basis, quite often bloody.

Were the prunes the only thing you got from your dietician sessions or did they help with anything else? I could probably find the funds for a couple of sessions, just not on an ongoing regular basis.

i have a friend with it (actually a relative by marriage) she was diagnosed as a child,in her 60s now. Eats like a horse, and is a size 6.. She said make sure you see a specific Gastro dietician. She is on codeine tablets permanently. Eats a pretty low fibre diet..

My son has had crohns since he was 8, he is now 26 so we have lived with IBD for a very long time. I will say that mesalazine on it's own won't be strong enough to keep things under control. Your son will need to add another drug into the mix to try to keep things even. Azathioprine is one that is often used alongside mesalazine . My son is on infliximab, a biologic which totally changed his life as he was really ill before he started on this.

You could ask to go on a liquid only diet , something like modulen or ensure [ there are others ]. These contain all calories and nutrients needed, but allow the bowel to rest.

Food is different for everyone, but when flaring there can be "trigger" foods. My son can't eat anything tomato based, seeds, nuts, chocolate. Anything high fibre. "white foods" are often safe foods. As another op said, the FODMAP diet is a could call to help when flaring.

It can be very frightening at the start of this journey, but you do get used to a new one of life. Don't be frightened of medication, it can be a game changer

Avoid red meat as it can be a trigger for a flare.

I've had UC for about 28 years now and it's well under control.

I take sodium balsalaside daily, with mesalasine suppositories when I feel symptoms. I also take two sachets of laxido every evening as avoiding getting constipated is the most important thing for me.

For me diet doesn't have a huge impact - I was told it has little impact and I haven't found one particular food is a trigger other than really fibrous foods that slow down transit through the bowel.

I have immune related colitis as a permanent side effect of cancer treatment.

Mine made me lactose intolerant so I have lactose free milk and cheese.

I also find fibrous vegetables set me off and onions.

I am a vegetarian so my diet is made more difficult because of my colitis.

However, I have seen a huge improvement since starting mounjaro.

It slows gastric emptying and reduces inflammation.

After a few weeks my bowels went from four times a day to once.

Although primarily a medicine to aid weightloss there are studies underway regarding prescribing low doses for a variety of other conditions.

I no longer need mounjaro for weight loss but am staying on a low dose for anti inflammatory purposes.

It has also helped my inflammatory arthritis.

Just a shame it is so expensive!

Yep stress is big trigger so symptoms can introduce a vicious cycle of stress and symptoms, more stress, symptoms.

Definitely get a list of low vs high fodmap foods online. Also look at dairy, maybe use lactose free or soy or oat milk if he drinks milk.

Stress or excitement

I was diagnosed when I was 17, am now in my 50s. I've never found that stress has any appreciable effects on my condition. Diet was also a bit of a red herring for me, if you'll pardon the pun. I have had a colectomy, so I haven't been able to eat much fibre for a long time, but I don't think anything diet-related actually triggers a flare. I can also only have small amounts of fizzy drinks, chocolate or red meat. I think unfortunately every IBD sufferer has to work out what they can tolerate. Definitely have a low-fibre, beige diet, while actively in a flare though.

The dietician suggested a few things, but that’s the only one that I’ve stuck with. I completely understand that you’d prefer to avoid the steroids!

So food and stress are not triggers for you which actually backs up the scientific research who also don't find supporting evidence. However, it could just be t hay not enough research has been done or its too individual to quantify. I take your point about beige food during a flare, it jist takes some getting used to as I'm fairly health conscious!

Codeine for the pain or to help stop diarrhoea?

Thank you...so does your son lead an otherwise normal life, I.e.relationships and employment not affected?

Good to have your take on the meds. I'm sure the consultant insinuated that if the mesalazine didn't work they'd have to consider steroids but perhaps I misunderstood.

He is vegetarian so no chance of that

Can I ask why you take mesalasine suppositories rather than the orally?